Here we go Again – the Postcode Lottery

If you are in the nightmare situation of having to fight to get treatment for Kidney cancer – please don’t think you have to do this on your own – we can help you and we will . We have many friends who are themselves patients and carers and family members who can talk with you and hold your hand to help you get through the appalling situation you find yourself in.

If your Oncologist wishes to prescribe treatment for your Kidney Cancer and yet your Local Health Authority ( England – Primary Care Trust -PCT or Wales and Scotland a Local Health Board – LHB ) refuses to provide funding then please email Rose and Julia at contact@kidneycancersupportnetwork.co.uk; we can provide expert advice, individual letters and contacts to lead you through the process and help you understand the policies and how you can challenge the system to make sure you have the best chance possible to get access to the best available treatments.

Julia and Rose have been helping cancer patients in 100′s of PCT’s to get access to proven and effective kidney cancer treatments for nearly 4 long years, sadly here we are 4 years down the line and the NHS are still refusing to provide active cancer treatment to desperately ill kidney cancer patients – we are fighting exactly the same battles now as 4 years ago.

In this day and age it is scandalous that patients not only have to fight their diagnosis of cancer, but they have to use vital time and energy battling with the very organisations that are meant to care for us. We are passionate believers in the NHS and universal care but how can we stand by and let administrators and managers decide who to treat and who not to treat. The decision whether and how to treat patients MUST be made by Oncoligists/Clinicians in Hospitals and not adminstrators sitting behind desks in PCT Offices. We cannot turn our back on our fellow cancer patients and watch them and their families suffer because “the system” will not allow new and innovative, clinically effective treatments to be prescribed to NHS patients.

We are not running a  business, we don’t even have a bank account and we certainly  don’t take money from the Pharmacuetical companies who make the drugs patients need. We are able to do it because we are helped by the James Whale Fund for Kidney Cancer Charity. All over the UK  patients and families donate money, leave legacies and run marathons, hold coffee mornings, curry parties , cycle on fundraisers   to make sure this vital  help is always there for the next person who needs it.  But Julia and I  also do it because we have to;  because  as cancer patients ourselves, we understand  what facing an uncertain future means  and the last thing on your mind should be whether your Doctor will be “allowed ” to prescribe you the treatment  you need in order to keep you alive.

NHS Constitution…….1st paragraph…….The NHS belongs to the people.
It is there to improve our health and well-being, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

Posted under Arch To Arc 2010, Britain's Biggest Curry Party, Campaigns, Cancer Drugs, Fund Raising, N.I.C.E., Rose Woodward, Uncategorized

This post was written by Rose Woodward on April 30, 2010

A Kidney Cancer Evening and Curry with a few Celebs…

Once or twice a year I get invited along to parties that The James Whale Fund for Kidney Cancer organise.  Last time it was at the House of Lords with Christopher Biggins giving the after diner speech.  I don’t know what I was expecting but he was hilarious, despite the fact that his computer presentation didn’t work, clearly well practised at off the cuff speaking.

Last night was the kick off for Britain’s Biggest Curry Party.  It was held at Café Spice in London with the TV Chef Cyrus Todiwala MBE cooking for us all.  I reckon (without counting) there were about 40 people.  All in all good fun, good food and good company although I have to say it was a strange choice for a starter, when was the last time you had Steak and Kidney pie in an Indian Restaurant? ….. but Kidneys were Cyrus’ theme for the evening and it was a welcome surprise, could have gone for 2 of those, in fact I nearly did but for the fact that Nick Turkentine (Fund CEO) was looking just as I was trying to whip his portion off his plate! (he’s quite protective of his food).

I’m not much good at randomly walking up to celeb types, for some reason you feel like you know them because you see them on the TV, but you don’t, so somehow it makes it awkward to talk… I guess that’ll be the star struck idiot in me.  I find it’s just as much fun (and easier) to watch.  However the ones I did speak to were nice.  

For those of you who remember David “Kid“ Jensen from his Radio One days, well, he was there with his wife… they’d just come from lunching with Prince Philip (as you do) and were a great couple.  I also discovered that there is somebody smaller than me! in the guise of David Van Day, singer in Dollar and I’m a celebrity get me out here contestant (and no I don’t watch it!).  I didn’t get to talk to him but on TV he looks like  such a tall chap (sorry David it must be the Tom Cruise effect, but just remember .. small is beautiful)… clearly I’ve missed my vocation because if TV makes you look tall then that’s where I need to be!

So hopefully an evening where lots of awareness and money was raised whilst everyone got to stuff their faces with curry,  and a great kick off to the curry week … I might even have signed one of the guests up for the Arch to Arc challenge!

More on the Arch to Arc in another blog later, but the great news is that getting 20 people signed up seems to be happening faster than I expected.

As a quick postscript … sorry Sarah, I didn’t mean to tear the banner last night, but dont think anybody noticed, well at least they wouldn’t have done if I hadn’t kept on pointing it out.

Please sponsor me if you can at either VirginGiving or JustGiving 

Posted under Andy Thomas, Arch To Arc 2010, Britain's Biggest Curry Party, General

This post was written by AndyThomas on October 20, 2009